It is amazing the difference a day can make. I tested negative for the cytomegalovirus and the symptoms from the BK virus have severely lessened. Rather than having continuous pain, I seem to only have two or three flare ups throughout the day, each lasting an hour tops. In fact, I was able to get four hours sleep straight and was amazed to awake for an entirely different sensation. I have never been so thankful to feel pain; meaning that I awoke for an entirely different type of pain, which came from my skin.
Between the remains of the BK virus, shedding all my skin, and the recurring joint pain, I'm still not feeling as though progress is being made. That being said, we are starting the immunosuppressant taper again and I pushed to be discharged tomorrow. As long as things are controlled, I'd rather deal with pain management at home rather than at the hospital. I'll still have daily visits for at least a month as they monitor my taper.
Despite the fact that I was so consumed with the BK virus symptoms, the lead oncologist explained that my recent GVHD flare was quite deadly this time around. I'm praying that I handle this round of tapering better. If not, I get another brush with death, more immunosuppressants, and start conceding that I will have a much longer road to recovery and that recovery will never be 100 percent.
Thursday, June 30, 2016
Wednesday, June 29, 2016
Knock on Wood
The BK virus appears to be somewhat diminished. Not only have test results shown that I am responding to treatment, but I am experiencing somewhat less pain in that area. Instead of having a constant stream of pain from the BK virus, I only get a few hours a day where it feels as though I'm passing a kidney stone. Also, for the first time in weeks, I just slept two hours without the BK virus jolting me awake; instead, I woke up from pain in my skin, which is related to the GVHD.
Because the GVHD destroyed my skin, like a snake, I am shedding my former body and receiving completely new skin. Not only is it more painful than I imagined, it's actually quite disgusting, and I get the worst stares when leaving the ward. In order to treat the skin, I have been undergoing PUVA treatments at an outside clinic. PUVA treatments are brief, controlled shots of ultraviolet radiation to my skin. It's almost like going tanning, but with a completely different goal. Although the treatment is primarily used for psoriasis, they have seen some success in using the treatment on skin GVHD. The goal is that these treatments will contain my GVHD while I taper off the steroids.
I will write more later. For now I am going to try to get another hour or two of sleep.
Because the GVHD destroyed my skin, like a snake, I am shedding my former body and receiving completely new skin. Not only is it more painful than I imagined, it's actually quite disgusting, and I get the worst stares when leaving the ward. In order to treat the skin, I have been undergoing PUVA treatments at an outside clinic. PUVA treatments are brief, controlled shots of ultraviolet radiation to my skin. It's almost like going tanning, but with a completely different goal. Although the treatment is primarily used for psoriasis, they have seen some success in using the treatment on skin GVHD. The goal is that these treatments will contain my GVHD while I taper off the steroids.
I will write more later. For now I am going to try to get another hour or two of sleep.
Friday, June 24, 2016
Please Pray
I'm asking for prayer. I need relief from this BK virus. I have not slept since it began and it is seriously the worst thing imaginable. For awhile I thought that I might have some relief, but I'm going on two weeks of this and things don't really seem to be progressing.
Through my school account, I was able to finally read some medical journals and studies regarding BKV. For those who experience acute symptoms such as myself, there is a 70 percent cure rate using a drug called cidofovir. I am on this drug and it is given once a week, every Wednesday. Nevertheless, 30 percent of people do not respond to the drug. Because of the high doses of immunosuppressants, I am much more likely to be in that 30 percent category and there is a significant mortality rate associated.
As of now, I drink a gallon of water per day in order to flush the system. However, like a double-edged sword, this leads to increased urination and pain. Typically, there is an hour or two hour period every day where I experience a period where it feels as though I am passing kidney stones. Throughout the remainder of the day, I am using the facilities every 10-30 minutes. If I choose not to use the facilities, the pain increases and I will have further episodes. Because of the lack of sleep, I'm completely disoriented and I'm not healing elsewhere.
I have said that GVHD is the primary concern. That is true, for the long run. However, for now, I need this BK virus gone--not because of pain but because of exhaustion.
I have been trying to keep pain medication to a minimum so that I could be discharged ASAP. I finally realized that I will not be discharged with this virus. Moreover, even if I were discharged, life wouldn't improve as long as this virus remains. I have decided to start taking pain medications with the hope that it might at least knock me out and provide some sleep. So far, it's not working. 2mg of IV dilaudid did absolutely nothing for relief or sleep.
Through my school account, I was able to finally read some medical journals and studies regarding BKV. For those who experience acute symptoms such as myself, there is a 70 percent cure rate using a drug called cidofovir. I am on this drug and it is given once a week, every Wednesday. Nevertheless, 30 percent of people do not respond to the drug. Because of the high doses of immunosuppressants, I am much more likely to be in that 30 percent category and there is a significant mortality rate associated.
As of now, I drink a gallon of water per day in order to flush the system. However, like a double-edged sword, this leads to increased urination and pain. Typically, there is an hour or two hour period every day where I experience a period where it feels as though I am passing kidney stones. Throughout the remainder of the day, I am using the facilities every 10-30 minutes. If I choose not to use the facilities, the pain increases and I will have further episodes. Because of the lack of sleep, I'm completely disoriented and I'm not healing elsewhere.
I have said that GVHD is the primary concern. That is true, for the long run. However, for now, I need this BK virus gone--not because of pain but because of exhaustion.
I have been trying to keep pain medication to a minimum so that I could be discharged ASAP. I finally realized that I will not be discharged with this virus. Moreover, even if I were discharged, life wouldn't improve as long as this virus remains. I have decided to start taking pain medications with the hope that it might at least knock me out and provide some sleep. So far, it's not working. 2mg of IV dilaudid did absolutely nothing for relief or sleep.
Thursday, June 23, 2016
Relief Denied
Well, my brief moment of joy at getting three hours of rest was short lived. The head doctor just told me that I will be at the hospital as an in-patient for a "long while." GVHD, the primary reason for hospitalization, is somewhat controlled. Granted, it needs to show signs of improvement, but we were expecting such improvement in a matter of days. The BK virus and pain will not keep me in the hospital, and I was really looking forward to being discharged by the end of the week. Instead, I'm here indefinitely and caught in a nice little Catch-22: They want to see me sleeping more so that I'm functioning well enough; but in order to sleep, I really need to get out of the hospital.
This really crushed my spirits today. Honestly, I would rather be at home rolling on the floor without any pain medications than to be stuck in the hospital for even one more day. The interruptions are constant and who your nurse is can either make things tolerable or it can be ruinous.
Finally, I need to get off this high dose of Prednisone. I have been reading about the damaging side effects of just 20 mg per day. I'm on 200 mg and it's killing me. Also, refer to the above Catch-22; Prednisone is the main culprit of my insomnia if the BK virus weren't an issue.
Some Relief
It might be too soon to tell, but it looks like BK symptoms could be starting to subside. We'll see, but I was able to sleep slightly over three hours last night. Granted, that's not ideal; however, it is a step in the right direction.
Perspective
I woke up today and forgot who I was for about ten minutes. Those were the best ten minutes of my life since I have been admitted to the hospital this time.
This BK virus is the most excruciating thing I have ever experienced. I was reflecting on my cancer treatment thus far, and I recall three periods of very intense pain: a virus known as C-difficile, an infection in my mouth that destroyed part of my nervous system, and this BK virus. This takes the cake, bar none. As a 34-year-old male, I cannot remember the last time I was brought to my knees screaming from physical pain. This pushes me off the edge every single day and it's frustrating because very little is known about it and symptoms very widely. If you have a kidney stone, the pain associated is well known. However, BK is often benign or asymptomatic. I felt as though it took nearly a week to at least receive validation that my pain was real. During that time, I really began to feel isolated and angry. The lack of sleep, constant pain, knowing that this could last much longer than anticipated, and the feeling of not being taken seriously became a bit overwhelming.
Perspective:
Let's put this into perspective. As of now, it has been roughly 11 days since this all really began. Think of people suffering from lifelong ailments such as MS, rheumatoid arthritis, trigeminal neuralgia, interstitial cystitis, etc. What about POWs or those who are tortured. I recently read an article about a woman who was selling her 11-year-old daughter for sex so that she could get her drug fix.
Matthew 27, Mark 15, Luke 23, and John 19--the crucifixion of Christ. Not only did he undergo one of the most physically painful forms of torture known to man throughout history, he did so for others and not for himself. People call me brave, but I'm not. My choice is either this transplant or death. Not only did I choose life, but I had no idea that I would experience such hardship post transplant. Christ, on the other hand, was fully aware of what He would experience (Luke 22:42) and chose to suffer for our sake regardless of the suffering. Added to that, imagine the emotional torment that He experienced when forsaken. Matthew 27:46.
One day I'll look back on this as nothing more than a dream. This too will pass.
On a lighter note, until it does pass, I just fired my nurse. I requested not to have a particular nurse during this period. She tends to be very rigid and puts the book before the patient. Right now, I need some flexibility and understanding. I don't need to be writhing on the floor waiting for meds because someone is more concerned with vitals over pain management. Speaking of pain management, think of all the suffering without meds. That really puts things into perspective.
This BK virus is the most excruciating thing I have ever experienced. I was reflecting on my cancer treatment thus far, and I recall three periods of very intense pain: a virus known as C-difficile, an infection in my mouth that destroyed part of my nervous system, and this BK virus. This takes the cake, bar none. As a 34-year-old male, I cannot remember the last time I was brought to my knees screaming from physical pain. This pushes me off the edge every single day and it's frustrating because very little is known about it and symptoms very widely. If you have a kidney stone, the pain associated is well known. However, BK is often benign or asymptomatic. I felt as though it took nearly a week to at least receive validation that my pain was real. During that time, I really began to feel isolated and angry. The lack of sleep, constant pain, knowing that this could last much longer than anticipated, and the feeling of not being taken seriously became a bit overwhelming.
Perspective:
Let's put this into perspective. As of now, it has been roughly 11 days since this all really began. Think of people suffering from lifelong ailments such as MS, rheumatoid arthritis, trigeminal neuralgia, interstitial cystitis, etc. What about POWs or those who are tortured. I recently read an article about a woman who was selling her 11-year-old daughter for sex so that she could get her drug fix.
Matthew 27, Mark 15, Luke 23, and John 19--the crucifixion of Christ. Not only did he undergo one of the most physically painful forms of torture known to man throughout history, he did so for others and not for himself. People call me brave, but I'm not. My choice is either this transplant or death. Not only did I choose life, but I had no idea that I would experience such hardship post transplant. Christ, on the other hand, was fully aware of what He would experience (Luke 22:42) and chose to suffer for our sake regardless of the suffering. Added to that, imagine the emotional torment that He experienced when forsaken. Matthew 27:46.
One day I'll look back on this as nothing more than a dream. This too will pass.
On a lighter note, until it does pass, I just fired my nurse. I requested not to have a particular nurse during this period. She tends to be very rigid and puts the book before the patient. Right now, I need some flexibility and understanding. I don't need to be writhing on the floor waiting for meds because someone is more concerned with vitals over pain management. Speaking of pain management, think of all the suffering without meds. That really puts things into perspective.
Monday, June 20, 2016
Not a Good Day
Today is the first day in a long time that I became extremely angry. Thankfully, with my BK situation, I was able to hide in the bathroom for awhile before erupting.
You don't have to empathize, understand, or even be sympathetic; however, I do expect that those who read this are aware of my very sensitive sleep situation. Basically, I'm exhausted, I haven't really slept since late April, and the coup de grace has manifested itself through the BK virus.
Side note: Whenever I search for personal accounts or go through cancer forums, it seems that for most people, BK is just another side effect that they mention in passing. However, when I talk to the nurses or doctors on the ward, they say that most people who contract BK find it to be overwhelming. It's odd, but I cannot find good information on BK, nor can I ascertain when it will subside or at least start to improve.
Anyhow, I finally fell asleep this morning and would have been on track for three precious hours of uninterrupted sleep. Within 15 minutes of falling asleep, I was woken up to be told that construction had commenced within 5 miles of the VA facility. As a policy, any immunocompromised patient had to wear a surgical mask until told otherwise. FYI, all my oncologists agree that those masks are worthless. All they do is keep others at bay because people think that you are highly infectious.
Then, once I was woken up, there was an unexpected shift change. Each time nurses change their shift, I have to do a little routine: take a set of vitals while sitting, take a set while standing, listen to your lungs, listen to your heart, what are all your symptoms, rate your pain on a 1-10 scale, where is the pain, what happens to the pain after the meds, let's review your meds, squeeze my hands, take off your clothes and show me the rash, check your weight, when was the last bowel movement, how was it formed, blah, blah, blah. What is the point of a pass down and log entries if you are just going to reiterate everything with the patient. Yes, yes, yes, I understand the need to be thorough and double check, policies, procedures, whatever; but let's use some discretion when a person has a nasty virus that prevents sleep and they have finally fallen asleep.
Now it's passed 09:00 on a Monday and we have a full staff. Everyone stops by thinking their five minute question or concern for me is not a big deal. In the aggregate, things add up and I won't be able to sleep until after the duty day which is around 17:00. Yet 18:00 marks the time for Prednisone--the nasty steroid--which should have me up and jittery for a few hours.
I've said it before, and I will say it again: hospitals are essential for fixing people up, but they are the absolute worst for recovery.
Also, today is going to be a long day. I have an outside appointment for some treatment that should help controlling the GVHD. Nothing like a burning/stabbing pain up your urethra while sitting in traffic or waiting for an appointment. And if that's not enough, I have gained ten pounds of IV fluids as they try to flush my system; i.e., more urination, more blood, more pain.
Anyhow, I think I've complained enough for now; but I am getting frustrated with this hospital stay. It was unexpected, I don't have an end date, and I'm unable to control my sleep schedule. Apparently "DO NOT DISTURB" is a magnet for disturbances. It's like an attractive nuisance, and I'm the one who is liable for all the petty intrusions.
You don't have to empathize, understand, or even be sympathetic; however, I do expect that those who read this are aware of my very sensitive sleep situation. Basically, I'm exhausted, I haven't really slept since late April, and the coup de grace has manifested itself through the BK virus.
Side note: Whenever I search for personal accounts or go through cancer forums, it seems that for most people, BK is just another side effect that they mention in passing. However, when I talk to the nurses or doctors on the ward, they say that most people who contract BK find it to be overwhelming. It's odd, but I cannot find good information on BK, nor can I ascertain when it will subside or at least start to improve.
Anyhow, I finally fell asleep this morning and would have been on track for three precious hours of uninterrupted sleep. Within 15 minutes of falling asleep, I was woken up to be told that construction had commenced within 5 miles of the VA facility. As a policy, any immunocompromised patient had to wear a surgical mask until told otherwise. FYI, all my oncologists agree that those masks are worthless. All they do is keep others at bay because people think that you are highly infectious.
Then, once I was woken up, there was an unexpected shift change. Each time nurses change their shift, I have to do a little routine: take a set of vitals while sitting, take a set while standing, listen to your lungs, listen to your heart, what are all your symptoms, rate your pain on a 1-10 scale, where is the pain, what happens to the pain after the meds, let's review your meds, squeeze my hands, take off your clothes and show me the rash, check your weight, when was the last bowel movement, how was it formed, blah, blah, blah. What is the point of a pass down and log entries if you are just going to reiterate everything with the patient. Yes, yes, yes, I understand the need to be thorough and double check, policies, procedures, whatever; but let's use some discretion when a person has a nasty virus that prevents sleep and they have finally fallen asleep.
Now it's passed 09:00 on a Monday and we have a full staff. Everyone stops by thinking their five minute question or concern for me is not a big deal. In the aggregate, things add up and I won't be able to sleep until after the duty day which is around 17:00. Yet 18:00 marks the time for Prednisone--the nasty steroid--which should have me up and jittery for a few hours.
I've said it before, and I will say it again: hospitals are essential for fixing people up, but they are the absolute worst for recovery.
Also, today is going to be a long day. I have an outside appointment for some treatment that should help controlling the GVHD. Nothing like a burning/stabbing pain up your urethra while sitting in traffic or waiting for an appointment. And if that's not enough, I have gained ten pounds of IV fluids as they try to flush my system; i.e., more urination, more blood, more pain.
Anyhow, I think I've complained enough for now; but I am getting frustrated with this hospital stay. It was unexpected, I don't have an end date, and I'm unable to control my sleep schedule. Apparently "DO NOT DISTURB" is a magnet for disturbances. It's like an attractive nuisance, and I'm the one who is liable for all the petty intrusions.
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